Aa
Ground Substance?
Hi
I have been told by my doctor that I have fibromyalgia. With pain in neck, back,shoulders, hands, thoracic region, both hips but what I find strange is the burning lumps and masses throughout my body. You can feel them under the skin as if they are caught in the fat layer. I have had to make a pest of myself to get answers and found this embarrassing at my Doctors. I first notice these lumps on my ribcage aged 30, 12 years ago. Then I was fit and exercised five times a week which I loved. I have had lower back pain for almost all my adult life. My shoulders became painful several years ago and also the thoracic region. Arthritis was noticed on x ray with bone spurs in these areas and on my lower facet joints. I have bilateral hip impingement which I am waiting to be resurfaced. It feels to me that I have several conditions over laying each other. The lumps and masses are in my thighs especially my right one, arms, ribcage, hips, stomach, also around my waist, calves, inside knees with various other patches. I also burn on my arms and shoulders like a wave of sunburn. I also have an occasional fever like flu which is a sign that a flare up is on the way but other times I have no warning. Flare ups last months. They get incredibly painful and feel on fire. Stress , hormones and exercise aggravate them and they are so sore and burn intensely. They are painful to touch and when not being touched. Also as they are covering my outer hip I am worried a hip operation will cause more damage to them. I noticed a reply that mentioned ground substance and wondered if this was the same thing. I also wondered if it was Dercums disease? I have problems sleeping. Often have numbness in hands and arms. Odema in legs and feet especially left one. Weakness in arms and legs. It often hurts to lift a cup up. Worry about all of this caused more stress which triggered off more pain. I don't worry so much now there is no point. My Doctor blames everything on fibromyalgia and he even says he doesn't know a lot about it. I think he thinks I'm nuts now as I look healthy. He has listened and given me pain killers but at one stage I was on 23 a day just to stay in work. For years I had an inflamed hip bursa which settled after one hip injection. Thankyou for listening to me moan, I am still smiling by the way. Can anyone please help? I would be grateful.
This discussion is related to do I have fibromyalgia? .
I have been told by my doctor that I have fibromyalgia. With pain in neck, back,shoulders, hands, thoracic region, both hips but what I find strange is the burning lumps and masses throughout my body. You can feel them under the skin as if they are caught in the fat layer. I have had to make a pest of myself to get answers and found this embarrassing at my Doctors. I first notice these lumps on my ribcage aged 30, 12 years ago. Then I was fit and exercised five times a week which I loved. I have had lower back pain for almost all my adult life. My shoulders became painful several years ago and also the thoracic region. Arthritis was noticed on x ray with bone spurs in these areas and on my lower facet joints. I have bilateral hip impingement which I am waiting to be resurfaced. It feels to me that I have several conditions over laying each other. The lumps and masses are in my thighs especially my right one, arms, ribcage, hips, stomach, also around my waist, calves, inside knees with various other patches. I also burn on my arms and shoulders like a wave of sunburn. I also have an occasional fever like flu which is a sign that a flare up is on the way but other times I have no warning. Flare ups last months. They get incredibly painful and feel on fire. Stress , hormones and exercise aggravate them and they are so sore and burn intensely. They are painful to touch and when not being touched. Also as they are covering my outer hip I am worried a hip operation will cause more damage to them. I noticed a reply that mentioned ground substance and wondered if this was the same thing. I also wondered if it was Dercums disease? I have problems sleeping. Often have numbness in hands and arms. Odema in legs and feet especially left one. Weakness in arms and legs. It often hurts to lift a cup up. Worry about all of this caused more stress which triggered off more pain. I don't worry so much now there is no point. My Doctor blames everything on fibromyalgia and he even says he doesn't know a lot about it. I think he thinks I'm nuts now as I look healthy. He has listened and given me pain killers but at one stage I was on 23 a day just to stay in work. For years I had an inflamed hip bursa which settled after one hip injection. Thankyou for listening to me moan, I am still smiling by the way. Can anyone please help? I would be grateful.
This discussion is related to do I have fibromyalgia? .
Thanks for defining the CPAP for me. I guess I think everyone knows about sleep apnea.
The CPAP mask is hooked up to the CPAP machine and is used for people with sleep apnea.
Hi
Thankyou so much for your reply. I don't know what to say apart from that I am so sorry to hear of your pain and distress. You sound like you are trying to really help yourself which is positive. That's why I went to the homoeopath its expensive but I have to do something.
I do get forgetful and and muddled up but not all the time. Pain medication was also making me really doped up. My sleep pattern changes all the time and even when I do sleep I wake shattered. I became sensitive to codeine and tramadol my skin itched everywhere constantly with no sleep. The odd thing is my skin has started to itch all over again and I'm not on these meds. Had to us my sons hay fever med to stop the itching last night or I would never of slept at all.
I keep researching about these lumps and although I hate anyone else having them it does convince me more I must have fribromyalgia. My doctor has been helpful in the fact he seems to believe me and adds he thinks Ive had it longer than realised. I have been with him for about 2 yrs and my old doctors were useless now Im afraid to change in case another wont believe me.
About the lumps his only comment is a surgeon wont touch them as there are to many. I don't care what they look like its how they hurt that matters. He has not refereed me to anyone else and I think he should. Now I just feel a nuisance. I am amazed that I have had 4 days in a row (this year)when the burning has eased but I cant enjoy them as I don't know what I shall wake up to and yesterday they have started to simmer away leaving me with the question how bad and how long this time? I worked in a physical job before this and now feel people judge me as im signed off. I just want my life back and will follow your advice on looking at food and so on. Im quite a healthy eater but could do better and will concentrate more on that side of things. We must be stronger than what we realise that's what I tell myself.
May I ask what a cpap mask is? I can tell how much you need this.
Thank you for your kindness and advice.Please let me know how thing go.
Thankyou so much for your reply. I don't know what to say apart from that I am so sorry to hear of your pain and distress. You sound like you are trying to really help yourself which is positive. That's why I went to the homoeopath its expensive but I have to do something.
I do get forgetful and and muddled up but not all the time. Pain medication was also making me really doped up. My sleep pattern changes all the time and even when I do sleep I wake shattered. I became sensitive to codeine and tramadol my skin itched everywhere constantly with no sleep. The odd thing is my skin has started to itch all over again and I'm not on these meds. Had to us my sons hay fever med to stop the itching last night or I would never of slept at all.
I keep researching about these lumps and although I hate anyone else having them it does convince me more I must have fribromyalgia. My doctor has been helpful in the fact he seems to believe me and adds he thinks Ive had it longer than realised. I have been with him for about 2 yrs and my old doctors were useless now Im afraid to change in case another wont believe me.
About the lumps his only comment is a surgeon wont touch them as there are to many. I don't care what they look like its how they hurt that matters. He has not refereed me to anyone else and I think he should. Now I just feel a nuisance. I am amazed that I have had 4 days in a row (this year)when the burning has eased but I cant enjoy them as I don't know what I shall wake up to and yesterday they have started to simmer away leaving me with the question how bad and how long this time? I worked in a physical job before this and now feel people judge me as im signed off. I just want my life back and will follow your advice on looking at food and so on. Im quite a healthy eater but could do better and will concentrate more on that side of things. We must be stronger than what we realise that's what I tell myself.
May I ask what a cpap mask is? I can tell how much you need this.
Thank you for your kindness and advice.Please let me know how thing go.
I thought I was the only one with the lumps. I have several in my ribcage area and my thighs. I had every trigger point on fire as the therapist explain to me. These hurt very much to the touch. The burning pain and heat to the touch is inflamation in that particular area. I have sleep apnea also which has worsened with the past year. My cpap machine had to be adjusted to double the setting. If I don't use my machine I don't
sleep. My mask broke and could not be fixed, and while I waited for a new one, at least 6 weeks, 4 of those weeks I had at least 2 nights with being awake 24hrs. This by itself will make you think you belong in a zoo. You can't focus on a thing, you lose your thoughts in the middle of speaking to someone. You are lost you don't know what day it is.
All I can tell you is my body processes do not function correctly. The toxins in your body are suppose to flush out with certain functions besides urination or bowel movements. When we do not get enough restful sleep, our bodies cannot replace the old cells with the new properly.
The web has alot of information that is free to download on your pc. There are some meds that don't work not all. Some work for one and not the other. The Fibro is as individual as people. You have to find out for yourself the right Dr., meds, foods, and allergies. I was one that could eat anything,now no eggs, no carbination, equal, dairy products, skin allergies.
The most important thing you can do for yourself is listen to what your body is saying to you. You overdo it and here comes the flare up.
Good Luck!
Listening,
Crochetya
sleep. My mask broke and could not be fixed, and while I waited for a new one, at least 6 weeks, 4 of those weeks I had at least 2 nights with being awake 24hrs. This by itself will make you think you belong in a zoo. You can't focus on a thing, you lose your thoughts in the middle of speaking to someone. You are lost you don't know what day it is.
All I can tell you is my body processes do not function correctly. The toxins in your body are suppose to flush out with certain functions besides urination or bowel movements. When we do not get enough restful sleep, our bodies cannot replace the old cells with the new properly.
The web has alot of information that is free to download on your pc. There are some meds that don't work not all. Some work for one and not the other. The Fibro is as individual as people. You have to find out for yourself the right Dr., meds, foods, and allergies. I was one that could eat anything,now no eggs, no carbination, equal, dairy products, skin allergies.
The most important thing you can do for yourself is listen to what your body is saying to you. You overdo it and here comes the flare up.
Good Luck!
Listening,
Crochetya
Have an Answer?
You are reading content posted in the Fibromyalgia Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
